June 2011 Clinic Visits

Brett has 5 visits in the last 5 weeks to the UNC Children's Speciality Clinic! The good news is that all of these visits were scheduled. We seem to be turning the corner, with 6 months now without a hospitalization, to a somewhat long run of wellness.

Brett showing the stickers he got at Infusion

Our clinic visits still average once  a week, but it's easier to deal with when they are planned "maintenance" kinds of visits and not emergency "illness" types of visits. We think this is mainly due to the fact that Brett does not have a central line in his body at this time. And it looks as if the next time he requires one we ought to be able to get away with just having a PICC line now that he's bigger and he's had several successes with PICC lines under his belt now. The main advtantage to the PICC line is that you only have to be sedated to place it. It can stay in place up to around 8 weeks, then it can be pulled out by a nurse; it does not require surgery to remove.

Brett's June 3, 2011 visit was for his IVIG (intravenous immunologlobulin) infusion. It was a little rougher than usual since the first IV did not work so he had to be messed with a lot more and poked twice. His June 7 visit was to see his immunologist, Dr. Michelle Hernandez. On June 9 he had his second set of infant PFTs, June 22 he saw his GI doc, Dr. Katherine Freeman, and July 1 he had another IVIG infusion. I'll break this information into two posts.

June 7 with Dr. Hernandez - she is the doctor that monitors the values we see in his immune function blood tests. I actually get to visit her in the Raleigh location at Rex! I'm always excited for this possibility since it's a good deal closer with much easier parking and walking in. We are still monitoring his Natural Killer cell (NK cell) function, which has been the main focus on whether or not he has an acquired autoimmune problem or a true autoimmune deficit. There are 2 values she monitors, the natural killer cell count and the NK cell function.

The strawberry band-aid that is on his hand was where we had to put the IV this time

I guess it will just take time to see, but she did say she if he had a true autoimmune deficiency, she would expect to see his function values stay down. It appears that they go up and down. (I think I'm saying this right, but don't hold me to it.) It could be that his immune system just used up all the cells that he was born with since he was so, so sick for so, so long. It may take awhile for his body to build them back up, which is why we keep supplementing his immune system with the IVIG every month. It seems to be working, as even though he doesn't have a central line anymore and shouldn't have sepsis, you might expect that he would've had another lung infection by now. Whatever the case, we'll take it! And we'll just be glad for his relative wellness and enjoy somewhat of a more "normal" life where our family is under the same roof every night and we are able to go places, spend time at the pool, and enjoy a vacation or two. This week we're traveling to Atlanta to see our extended families, who all live in the area. It will be the first time our twins have visited Georgia and the first time many of my extended family will meet them!